Blimmin' Koro author Jill Bevan-Brown with one of the illustrations from the book, which are all based on her mokopuna. Photo / Judith Lacy
Winston Bevan-Brown used to give his mokopuna rides on his washing-line swing, until the washing line broke.
The Palmerston North man can't do that any more but those fun whānau memories are captured in new children's book Blimmin' Koro, written by his wife Dr Jill Bevan-Brown.
Winston, 71, has advanced Lewy body dementia. He stopped working as a lecturer at Te Wānanga o Raukawa in Ōtaki in 2007 because of his deteriorating health.
His students had noticed he was repeating information he'd just told them and Jill recalls he would make her a cup of tea in the morning forgetting he had just made her one.
Lewy body dementia is not easy to diagnose and only became diagnosable in the 1990s.
Jill didn't set out to write a children's book. Her daughter-in-law commented it was a shame the younger grandchildren only knew Koro, as they call Winston, in a wheelchair.
This got her thinking and she put together a photobook and story for their 12 mokopuna, who range in age from 3 months to 14 years.
Jill wanted to show them Koro once walked, was adventurous and did all sorts of things but that he also has dementia and how it has progressed.
Winston and Jill have travelled to India, Jordan, Iran, Russia and Afghanistan and lived on a kibbutz in Israel.
Blimmin' Koro includes the incident when Jill gave Winston a dead possum to bury. He dug the hole, covered it again with soil but forgot to bury the possum.
Jill says there's nothing creative about the book because everything in it happened. Their son Māhaki translated it into te reo Māori because that is the first language of nine of their mokopuna. Māhaki teaches at Mana Tamariki in Palmerston North.
Jill showed the book to friends and family who suggested she approach a publisher and Kātahi rā, e Koro e! gained a wider audience.
Jill completed her PhD on culturally appropriate, effective provision for Māori learners with special needs in 2002. She previously lectured in inclusive education and was an associate professor at Massey University before taking early retirement in 2014 to care for Winston.
Jill and Winston have been together for 50 years and have three children. If she needed care, Winston wouldn't have hesitated, she says, and she doesn't regret for one minute giving up her career to care for him.
While Winston is no longer independent, Jill says he has a good quality of life. He's loved, warm, well fed and included in all activities.
"He's still a vital part of this family."
The relationship is not all one-way as he still contributes to the family just by being. Jill believes she is more patient from having him as her husband.
"I know my grandchildren are a lot more caring because of him."
When they retired, they planned to travel around New Zealand in a campervan.
"You don't know what life is going to deal up," Jill says.
Eventually she would like to write a book for adults about dementia, believing with greater understanding comes greater inclusion.
"People with dementia are valued people, we've got to include them in society, we've got to stop being scared of them."
Jill says her philosophy in life is total inclusion.
The couple go out and about as they would if Winston didn't have dementia, attending shows, flying a kite at Ongley Park, ticking off the walking paths around the city.
They have had instances of people of all ages helping them negotiate tricky surfaces and situations.
"I take my hat off to Palmerston people," Jill says. "People are great in Palmerston."
Jill says the book's message is don't be scared of people with dementia but include them in your life. They might not be able to tell you they love you but they still do.
Jill has written teachers' notes with suggested activities that are available on publisher Oratia Books' website.
Christchurch artist Trish Bowles' drawings are modelled on photos of Winston and Jill's grandchildren.